I want to thank everyone who supported me on my journey with my husband of 50 years who had vascular dementia and congestive heart failure.

You should not feel guilty about anything, what you did was honor your husbands wishes! For that you should be proud of yourself.

Sometimes honoring someone else wishes can be hard especially when what they want for themselves is different from what you want for them. Individuals has a right to make their own decisions even if others think that the decisions they are making are poor decisions.

Although, your husband had vascular dementia that does not automatically mean that he was not capable of making decisions for himself. Individuals with early to mid stage dementia can often times express their wishes and when they do family should honor their decision.

I applaud you for allowing your husband to take charge of his own choices. I wish you well.

Condolences 💐 for your tremendous loss. If onlys and sorrys are very painful, and wondering and thinking you could have and should have done differently are extremely painful, lest we forget that we did what we thought was the best in the short window that we had.

Every time we make a decision it's under parameters that we tend to re-write in hindsight. It's the smallest of details that we omit. Were we healthy, perhaps we had a brewing unknown sickness ourselves, when we decided to do or not do something..... It's impossible to truly know, you did what you thought was best at the time decisions were made.💐💐 You will never be the same, and that's okay, "It's Ok that You're Not Ok" 😔It's okay, that we're not okay when loved ones die, even as society insists that we must be okay 🦋 when everything drastically changes. 😔🥺

Hello. Im taking care of my 93 yr old mother who suffers from Dementia.
I think the same thing you do.......what more can I do to help her?
It will never be enough because we have no control over it. You did the best you could and be happy with it.
God is in control and he knows who you are.
Love yourself, hug yourself and remember only the good times you spent together.💖💖💖

My husband and I have been married for 48 yrs. He is on hospice due to Parkinson and lewy body dementia. He is bed ridden and I do all of his care. I know that when he passes I along with his 4 children, 10 grandchildren and so far 8 great grandchildren will celebrate the husband, father and grandfather he was. It is hard for them to see him like he is. I will tell you the same thing I tell myself and told my mother when my father passed....when it is your time to go home to haven nothing can keep you here nor can take you if it is not your time to go. Think of him looking down on you and he is pain free. He will be waiting with open arms for you when it is your time to go. We all get upset with our spouses when they are not doing when we think they should. Think about the good things you did for him and not the times you got upset. Celebrate him and only think of that. I am sure that is what he would want for his wife of 50 yrs. Bless you.

I am so sorry for your loss. I am going thru the same thing. I lost my Luz in March and have all of those hind sight thoughts.
I think of her a lot. some memories bring on the tears and I apolagise to her frequently.
Recently I have thought of the better times we had together from years ago. Those thoughts make me proud that I married her.
I have started sort of a scrap book of her. It is more than pictures. I have her certificates and accomplishments in it. I even put a picture of her on computer screen saver.
It helps if you have someone to talk to and share those memories with.
It will be difficult to talk and not say "WE' did this or that. So be it. After fifty years you cannot and should not try to remove that person from your conversations.
Cherise the memories and thank God for bringing the two of you together.
God bless you for all that you have done.

Sorry for your loss!!I do not think there is anything you can do when they want to be left alone we can not force them to want to interact we can not force them to go to Dr.appt. if its the end of life WHO wants to spend it at the DR .I THINK YOU GAVE YOUR HUSBAND EXCATLY WHAT HE ASKED FOR ,NEEDED ,AND WANTED THAT IS A VERY GOOD THING TO DO!!!!

Donvee, Keep celebrating the good things that came from a lifetime of love. Forgive what you cannot change and remember that no one wakes up in the morning and decides to make the wrong/bad decisions. No matter how much you revisit the past, there is nothing new there to see. It's okay to be upset/mad/angry. It's okay to make up your mind that you will not make the same decisions for your life. Surround yourself with all the love from your family and friends. Blessings to you on your journey.

I am sorry for your loss. When Mom was at a point where she was starting the dying process, I, too, felt guilty that I should have done more. I was reassured by the hospice nurse that I couldn’t have done anything to change what was going on. So, I think what you are experiencing is normal. I was not patient all the time and I feel bad about that. Caregiving is hard work.

Donvee: Oh, I am so very sorry for your loss. That has to be extremely difficult for you! Please do not hang onto guilt. Do not go through process of what ifs, could ofs and should ofs because it will not allow you to grieve. It will only bring you upheaval in your mind and this is the time of quiet reflection and grieving. I am praying for you and wrapping my arms around you.
Love,
Llamalover47

I have been caring for my mother for 8 yrs. She was diagnosed with end stage congestive heart failure and put in hospice 4 months ago. I am beyond tired and I welcome hospice, but I still do mostly everything. My mother is demanding and expects instant gratification. My health is bad too and I had to draw up some boundaries with her so I can concentrate on getting stronger. I will look into nursing homes with hospice care soon if her health gets into more skilled nursing care that I can’t provide. I don’t feel guilty. I’ve done my best and I have to let it go at that.

I feel she still has some time left, even though she’s been on hospice for 4 months. If I knew she was really slowing down, I would try to keep her home. But she is still too mentally active in this world and I’m not feeling like she will be leaving anytime soon. I need a break and I have to think of myself without guilt.

I'm sure you did all you could. No need to punish yourself. The signs were there when he wanted to be left alone. I am in a similar situation. Some days my husband wants to venture out and some days he just wants to be left alone. You did the right thing by just letting him be ! Please do not punish yourself.

STOP WITH THE GUILT - it will only tear at you but in the end will accomplish nothing - you now look back at what you might of/could of done but you should look at what you did to help - hindsight is 20/20 ....remember you can lead a horse to water but you can't make him drink - your hubby was the one who withdrew into himself as was his choice  - remember the good times & disregard the negative ones

You did your best and what you could manage at the time. None of us are perfect angels and we've all fallen short at times. But the intention is what matters. You also followed his wishes. Death to one person is not death to another. So his wishes on how to die...would not necessarily match your's. And that's often why we have a hard time with the end....with second guessing and guilting ourselves.

I am sorry for your loss...maybe grief counseling would help. You are not alone.
Hugs.

Donvee, I have been caregiving for my mother who has Alzheimer’s for the past 2 years and have questioned myself time and time again. The doctors can’t always give you a clear answer as to what medication to give and how often. So we can’t be hard on ourselves when the professionals are pretty much playing a guessing game. There have been times my mother won’t take her meds. That really makes it tough.

One of the best things to do is talk to someone. I am available if you want to chat. I think sharing stories is so helpful!

Hope to talk soon!
Dawn

Oh honey, you are now on the most difficult journey of your life. My husband of 51 years passed in March of this year so I too am facing a shattered life. I am so sorry for your loss and your pain. What you are experiencing is, unfortunately, perfectly normal. There is nothing anyone can say, they just need to listen and let you cry. I have learned so much from 2 books I have purchased from Amazon. The first is called "The Special Care Series (4 book set). Very short reads meant for 1st month, 3rd month, 6th month and 11th month after your loss. Wonderful books. The second is " Don't Take My Grief Away From Me" both are by Doug Manning and are inexpensive. I can't recommend them more to you. You will find validation of what you are feeling. I wish you peace on this journey. Janina

This is something I have done and continue to do - with thoughts:
1. Create, actually write down 1, 2, 3 a list of what you DID DO that was helpful to your husband and everything you did with loving intentions. Whenever you think of something new, add it to the list.
WHAT THIS DOES: It helps you counter-balance the guilt or feelings of not doing enough. It is a way to re-program your brain to support you, now.
2. When you react or think of something and feel guilty, IMMEDIATELY refer to this list (or shift your thought(s) to the positive. This is an intentional exercise in changing your mind in the moment. The more you can counter-balance the feelings with new thoughts - that support ALL THAT YOU DID -
It is important too -to remember that likely 100% of us who lose a loved one feel regrets, guilt, the 'what I could'a should'a done. This seems to be an 'almost' human reaction to Americans (realizing other cultures deal with death differently). I send you a hug and lots of loving compassion for you. gena

Guilt is probably one of the most common and most overwhelming emotions we feel when someone dies, especially a spouse and especially if we were the caregiver. At the time of your husband's decline and difficult behavior, I am sure you did what seemed the right thing to do at the time. Most of us do and then only later look back and think we might have done more or done some things differently. Give yourself credit for doing the right thing as your situation evolved. Be patient with yourself and give yourself as much time as you need to cope with your husband's passing.

To paraphrase a quote from Supreme Court Justice Sandra Day O'Connor (husband in nursing home with Alzheimers) Asked if she regretted any of the decisions she made as a Judge (but applies here, too.) Sure. Hindsight is 20/20. But I can honestly say given the knowledge available to me at the time I made the decision - I made the right decision. (She retired with the disease herself).

When coping with something like Alzheimers or any disease that will eventually take the person - just to be there and try to help and get them through until the inevitable happens - that is quite an accomplishment. To be able to do everything else live requires on top of that is almost super-human. Thank you God for seeing us through.

I don’t think I will ever feel like I have done enough when my wife passes....so I think this is going to be normal....and I am also sure that when her time comes...that knowing it is “normal” to feel that way isn’t going to be enough for me...
It will probably just take time for me.

With this much love and caring over these many years it grieves me to hear that you are not kinder to yourself now. I understand that "guilt is the American way" and that all good and decent people wish they were perfect people, but perfection is not a goal humans ever reach. I am so sorry for your loss. Every good thing in your husband would want nothing but peace for you. Hugs to you.

Your loss is so new, and the reactions so normal. You respected his wishes which is all any of us can hope for. You did what you could, you reacted as the human being you are under pressure...none of us can do anymore than that. I've learned much and here and from life and already recognize how much guilt I may feel after I lose my mother...but even knowing that I cannot stem the anger or a hurtful word under my breath. Focus on what you DID do...and how it made a difference.

We can only do what we are able! I too feel guilty about not doing enough for my wife! I feel guilty about getting mad at her when she can't move, I know it's not her fault, thinking about putting her in a home but feel so guilty leaving her alone, I know she would NOT do it to me if it were reversed! Try to live your life and if you keep feeling bad see a therapist they can help!

Love and hugs. We understand.

Not a day goes by that I don't think about my husband, who had vascular dementia that progressed over a period of about 5 years until he died of a massive stroke. At first I felt guilty that I hadn't been kinder and more supportive, but all our plans for retirement travel had gone out the window, and we constantly argued over why he couldn't drive anymore....he even arranged to take driving lessons and the instructor said "Well, he could drive around the block, not over 25 mph, and no left hand turns." His memory was not as damaged as his "executive function" and his formerly amazing sense of direction. He got lost all the time. He couldn't find anything unless it was right in front of him. He couldn't operate the TV remote. I guess it was minor compared to advanced dementia, but he was still not the person I married. But I felt so guilty when he died that I had not been kinder! Still, we were lucky to have what we did for 33 years (both of us had been divorced), and today 6 years later, I (mostly) remember the good times. The hospice where he died also had a program of weekly meetings for survivors, and that was invaluable. Try to find such a group if you can.

My husband died Feb., nine year illnesses. His little maltese, always by his side, passed May from a broken heart. I grieve what is lost also wish we could have some re-do here and there. I cant believe how difficult this process is. I think support groups really have helped. I attended caregiver groups when he was alive and I was falling apart being the lone caretaker. I offer you a hug from here. The only help I find is my friends who have experienced this.

So sorry for your loss...my mother had the same feeling when my father lay in agony, feeling guilty about sending him to hospice...but he died peacefully, and that is all anyone can ask for.
There are a million things that run through your head, and yes, even the arguments. Rest assured you did all that you could.

I have started to write a response 3 times and NOTHING seems right.
What I want to say is in my head and heart but when I write it down it seems flat. That is the only way I can describe it. (I love baking so to compare it is like leaving salt out of a recipe the basics are there but there is no depth)
No matter what you are feeling...
Guilt--because you could not do more
Guilt--because you are relieved that he is no longer in pain or trapped in a body and mind that was no longer his.
Anger--That he left you
Anger--That you are left with all the paperwork to fill out
Fear--That you could have done more
Fear--What are you going to do with what others call a "normal" life.
I could go on and on but all the feelings that you have are the same feelings that we all have experienced.
No matter what I read, no matter what Hospice told me, no matter what I knew in my brain my heart still felt like it was torn from my chest and stomped on the morning the love of my life died.
All I can say is the raw pain will diminish and become a dull ache. The facilitator of one of my support groups gave me this quote and I still have it on my desk.
Grief never ends
But it changes
It's a passage not a place to stay
Grief is not a sign of weakness
nor a lack of faith
It is the price of love.

It has been 2 years and 99% of the time the days go on as usual but once in a while a song will come on the radio and it will have me crying, I can hear the same song later and it is just a good song. How to explain how it effects me one way one day and the next another I will never know.

All I can offer is enjoy your life, do the things that you want to do. If there is a trip or something special that you both wanted to do and you did not get the chance do it..honor him and think of all the things that he would have loved about what you are doing. I have a friend that will not go on a particular trip because she and her husband had wanted to do it but she will not go because he is not with her. I on the other hand try to do things that I know my Husband would have loved to do. And I think about him when I am doing them. So 2 different ways to deal I think one is healthier than the other...
(((HUGS)))

Should have..would have..could have...it's all in the past. Try to let it go and just go on living.

No matter what you do you will feel guilty. Even if you pressed on to do activities you WILL feel guilty for being very assertive when he wanted to be left alone. And by doing nothing you will feel guilty. So there is no winning the guilt game.

We are human and not Jesus walking on water.

I also lost my best friend and companion of 23 years on July 29. He had been in dialysis for about 4 years, had a triple bypass, defibrillator pacemaker, COPD, heart failure. Then during one of his hospital stays or procedures, he got cdiff and an internal fungus infection. He was hospitalized this final time with bacterial pneumonia and blood pressure so low that he could no longer be dialyzed.
I feel BAD, about his passing, but his earlier lifestyle and family health history all contributed to His passing at 69 years old. I still wouldn't trade the good years we had together.

Dear Donvee,

Like the others on this AgingCare column, I am so sorry for your loss. We all live and die; and it is so much easier to consider life than death. As others have said to you, "Don't beat yourself up." You did everything you could, everything that your husband would let you do.

Now, you have a new challenge that many of us must face. My wife to whom I have been married for 56 years is at the end stage of her life after eight years with Alzheimer's. One never knows how life and dying will happen.

One grief counsellor said to me that, "Everyone grieves in their own way and at their own pace. You have to respect that." So don't try to set limits on your grief and decide beforehand how you will grieve. It has been said that "There is no love without pain; but only love can heal that pain which it causes." That's from Father Julio Lancelotti, in the front of Julia Samuel's book, "Grief Works: Stories of Life, Death and Surviving" (Penguin, 2017). You have to heal your own grief from within and with your friends. Perhaps the stories in that book might help.

With my prayers and hopes for your future